Day 13/MRI

Eli got his MRI today. They had some people cancel so they went ahead and did all the scans today. It took about 4 hours. He went to sleep fast and woke up just fine. He was snuggling the nurse when I went back to see him. They said we should know the results tomorrow.

As far as feeding have gone. He was NPO after midnight so it's kinda hard to say. He started back on the formula at about 4 or 5 tonight. He hasn't thrown up yet, but he has only been on the feeds for about 5 hours and they are pumping it really slow. The rate he is getting right now is 1 oz an hour. Tomorrow we will know more with how he is doing on the new medicine and if it will work for him.

This is called an HME or artificial nose. It heats and moistens the air that he breathes through the trach

We will probably be in the hospital until next Monday. I still have to take the CPR class sometime this week. I'm not sure when that is scheduled. Then my husband and I both have to take a trach care class and my husband is only able to come down here to Houston on the weekends. So our trach care class will be on Saturday. If everything looks good we will get to go home Monday. It seems so far away. Eli and I both miss our family. It really stinks that we have to be so far from home just to get the care he needs.

Day 12

Eli had a fairly uneventful day today. The medicine the doctors started him on to speed up his digestion is helping, but it is also giving him diarrhea. He has pooped like 10 times today. He did throw up once and burped like he was going to throw up two other times but nothing came out. I'm going to give the medicine a few days and see how he does. They let Eli get out of the room today. He went for a wagon ride all over the 7th floor. He just sat back and took it all in. I think he liked looking at something other than what's in his room.

Eli going for a ride

Tomorrow is MRI day and I am anxious to see the images and find out if this thing is growing and how much. I already feel in my heart that it is growing because you can see the tumor in his neck much more than you could back in September when he had his first scan. I just hope he gets into that clinical trail up in Indiana. I don't know what the doctors will do if it shows a large amount of growth and the clinical trial ends up being a bust. It's one of those things where we will just have to wait and see and hope for the best.

Day 11

Eli did really well on the 24 hour no vent trial. He is still off the vent and doing amazing! He is still having problems throwing up though. The GI team came and seen us today. They are putting him on a medication that is suppose to speed up his digestion. If the medication does not work and he continues to throw up then they said they will start running a series of tests to see what the problem might be. It just really sucks. We were all hoping that getting the g tube would just fix his throwing up. It's really disappointing. I'm glad we are still in the hospital though so they can work on getting him better. The plan is with this medicine we are going to work him back up to his normal feeding schedule that he had at home before the surgery. Also on Monday and Tuesday he is going to be getting his MRI's. Monday he will get his brain and neck and Tuesday he will get his chest and abdomen. They split it up because if they did them all at once it would take over 4 hours and they don't want to sedate him for that long. As long as we get the MRI's I'm happy.

Eli's Daddy and brother came to visit this weekend. It is so nice having other family around. I taught my husband how to suction and he helped me do trach care. We did it all by ourselves without a nurse. I think I am starting to feel more and more comfortable in taking care of him and knowing what he needs. I've had to relearn his sounds because they are different with the trach. Even his yawns sound different. As a mom you learn what each cry means and whether a cough is a sick cough or just a random cough. It's weird to kinda have to start over. I was a little jumpy to the new sounds at first. but I'm slowing starting to figure them out.  Everything takes time I guess.

Day 10

Eli is on a 24 hour no vent practice run. It's been so nice to hold him and get one of his hugs. He's been doing so well on it. They put this thing on the trach called an artificial nose. It acts as a filter and warms the air. He really likes not having the tubes everywhere.

Eli with his artificial nose

His feeding haven't been going too well. He just keeps throwing up. I don't know what's wrong and neither do the doctors. I asked them today what's the next step. I know they have something called a gj tube that pretty much bypasses the stomach and puts the food in the intestines. There is also a surgery where they would close off the top of the stomach to keep him from throwing up. I'm not sure what they will do, but he can't keep doing this. He's not even getting enough food to keep him hydrated. They had to hook him up to iv fluids. I just wish we could figure this thing out.

Day 9

There's not much to report today. Eli is not quit back to his old self. A little sleepy and he doesn't feel like playing much.
The trach he has in right now has a little balloon that the doctors inflate to keep the air in his lungs. Today they deflated it in hopes it would help with the throwing up issues he has been having. They said it might be that the balloon is irritating his gag reflex. It has helped a lot. He threw up a few times but not very much. When we put a new trach in next week the doctor wants to put in a smaller size to see if that helps even more.
Today I have done most of his care on my own. I am suctioning him 100% of the time with no help. You have to do trach care twice a day and I did most of it. I'm still trying to figure out the motions of that one. It seems so awkward and out of sync. It's going to take time to find my own way of doing it before it feels natural.

Day 8

Eli has been really sleepy today. The doctors said to try and keep him up as much as possible so he will sleep tonight. I've been distracting him with his favorite movies and trying to keep him entertained with toys.
They are trying to wean him off the vent. Today they took him off the vent for 4 hours and then checked his blood gases to see how he did. They said that he was putting out too much co2 (breathing too fast is the non doctor term) and that tomorrow they will try again and see how he does.
He also had physical therapy today. They made him pull to standing and also tried to get him to crawl. He worked really hard. The therapist and I are in agreement that he is holding himself back because he is afraid to move certain ways thinking it will hurt him. He did really well though and hopefully he starts to gain confidence soon.  
I've been watching the nurses like a hawk and trying to pick up as much information from them as possible. Today I suctioned him for the first time and later when we clean the trach site I'm going to ask to help as much as possible. They said I won't take the trach class until I've had some bed side training, that's why I've been trying to watch and learn as much as possible.
The care coordinator came by today and she is setting us up with a medical supply company and an at home nursing company for when we go home. She said that they will set up for an ambulance to take him home, which is nice because I was kinda worrying how that was going to work with us living 240 miles from the hospital.

Day 7

Today has been a weird day. Eli's lungs look good and he is breathing better, but now we are having issues with his stomach. He has been throwing up off and on all day. They have been playing with how fast the formula pumps into his g tube all day. So far nothing has worked. I'm starting to thinks its one of two things. He is either dizzy or he has a stomach bug. When he sits up he gets this look on his face and wants to lean against someone. That's why I think being dizzy might be to blame.

On a good note we did get to move out of picu and into pcu which is an intermediate floor. We have our on room with a bathroom and a couch for me to sleep on. They said he will be here the rest of his stay since he is on the vent and tomorrow I start my training. I got a huge binder with all the stuff I have to learn including a cpr certification class. Lots to learn before we can go home. I'm already thinking about how we are going to drive him 240 miles with the trach. Not really sure how that will work, but I'm sure they will teach us. It's been a long day and I'm ready for bed.

Note To Self

We have been in the PICU for 6 days now and these are some of the things I have learned. Someone else is always going through more then you are. Since being here I have seen several families loose their children. I've seen them in the waiting room trying to decide do we pull the plug or do we wait it out. I've spoken to them and prayed for them. I've seen their sadness and confusion. I've learned the dreaded sound of the alarm going down the hall to take a child to surgery so they can take their organs and donate them to another child sitting in another ICU somewhere. I've seen the families gather in a large group in the waiting room and enter the ICU 2 by 2 until they have all said their goodbyes. I've seen siblings playing in the waiting room, but having a look of knowing that something isn't quit right. It's really been an eye opening experience for me. I know Eli has a rough road and has had to go through so much for such a little guy. But I also know that there are families going through so much more. People say I am strong and I am a great mother, but I'm just doing what most moms would do and that is stand by their child no matter what. If anyone reads this say a prayer for the families who have lost a child today. Pray they find peace and understanding. Pray they stay strong in their faith and lean on their friends and family.

Day 6

Eli has had a very rough morning. They changed out his trach at about 7:30 to the smaller one. They also started taking him off all the sedation and pain meds. About an hour after the trach was changed his oxygen started to drop into the 60's. They bagged him and suctioned and they weren't getting anything out. ENT came and did a scope to make sure the trach was in the right position. Then they did an x ray to check his lungs. They said that he has a lot of fluid in them which is understandable since he has been on all the meds and laying down for 6 days now. They started him on these weird breathing treatments where this machine pulsates air into his lungs while giving him medicine at the same time. It's kinda like a breathing treatment with a nebulizer but completely different.

Right now he is resting comfortably, but we are going to be in the ICU for one more day because of all the problems with his lungs. They did end up giving him some methadone today and now they are just waiting to see if he will need more or if his body is good to go without any medicine.

Day 5

Today they took Eli off the paralyzing medicine they had him on. He's still on the sedation medicine but he is kicking around and trying to roll over. He's even opening his eyes a little. He's also giving the nurses hell. He pulled the tubes that go into the trach out a few times already so they put him in some soft restraints. Tomorrow they are suppose to change the trach to the smaller one and start taking him off the sedation medicine. They warned me today that some babies who have been on these meds for this long may go through withdraws. They said if they see signs of that they will put him on methadone and some other medicine to help him through the withdraws. I really hope they won't have to put him on methadone, but if it will help him then I guess that's what we will have to do.

I also wanted to say a big thank you to everyone who commented here or sent messages on babycenter. You guys are amazing and have really helped me get through these first 5 days.

Day 4

Eli is still sedated and on the paralyzing medicine. There really is nothing new to report. They upped his meds the other day and since then he hasn't been kicking and getting mad like he was before. We are just hanging out and waiting for them to say its time to wake up.

Day 3

Nothing new to report today. He's still sedated and they plan to keep him that way until day 5. They told us this morning that his echo was normal. The only thing they saw was his left top part of his heart is a little bigger, but its not causing any issues and blood is flowing the way it is suppose to. They started giving him pedialite in his g tube today. It's only 5cc an hour but so far he is tolerating it fine and there is no leakage right now. Other then that there is nothing to report except everyone else went home today. It's going to be lonely until he wakes up. The waiting room has some books, so I guess I'll be reading a lot.  

Day 2

Eli is doing good today. They still have him what they call paralyzed. It's like a medical coma. He has been moving around some though and kicking his feet. They did an echo of his heart this morning. They're concerned the obstructive sleep apnea has affected his heart. The doctor said they probably won't come tell us the results of the echo until tonight. It just confirms for me that we made the right decision to get the trach.

It's nice to see his personality show even when they have him all druged up. The nurse likes to keep the kids covered up when they have lots of tubes and stuff on them. Eli will kick both legs until she takes the cover off. He hates to be covered up because he is hot natured. He can feel like an ice cube and still won't let me put a cover on him at home. It's nice to see its the same here. I'm praying he heals quickly so they can wake him up. I'm ready to see his smile and feel his sweet hugs. 

Feeling helpless

Eli is doing pretty good. They have him sedated and plan on keeping him that way for 3 or 4 days. It is so sad to see him laying there not moving. They drew some blood earlier and tears started falling down his cheeks. It sucks seeing him there and not being able to comfort him, to hold and kiss him. All I can do is rub his face and arms and legs and just let him know I'm there and it's ok. I know him and that probably just pisses him off even more. I've been trying to stay quiet and just let him rest. These 3 or 4 days are going to be hard. Praying the good Lord gives me the strength I need to care for him.

Out of surgery

Eli is finally out of surgery. The doctor said the g tube went perfect and the tumor in his belly didn't cause any issues. He said its just there not really bothering anything. They are taking him to the picu and we should get to see him soon.

Update

Trach and scope of his air way is done. ENT gave me pictures of the airway. He says the trachea area was a little smaller then normal and the left bronchials or hole going to the left lungs is restricted from the tumor. He also said there is a tumor in his left ear. He's getting the g tube as we speak so he should be done soon.

2nd update

Just got a call from his nurse. The ear tubes are in and now they are starting on the trach. We are all just waiting around and Dakota is practicing his mad player skills!

Surgery update 1

They just took eli back. They will be doing the trach. After surgery he will be in the ICU for a few days under sedation. I'll update again later when we get our first update.

Surgery time

Eli's surgery will start around 8:15am tomorrow. I will post updates here as I get them.

Moog Super-mini Backpack

Eli got a new backpack for his feeding pump. We had the regular sized bag by moog and it was way too big for him. We were always following him around like a dog on a leash because it was too long and too heavy for him. This bag has been amazing for him. He now has independence that he didn't have before. It is a little harder to get everything in the bag, but that's only because it is so small that it's hard to get my hands in the bag.

Eli is 20 months old and 20 pounds

The next set of pictures is just to show what I do to prep the feed bag and how I load everything into the moog super-mini backpack. I wanted to make a blog about this because when I got the bag I went looking for better instructions on how to set everything up and could not find anything. I hope it might help someone one day.

I purge all the air out of the feed bag

This is what the bag looks like with no air

I load the bag into the feeding pump

Place the pump into the front part of the bag, between all the stretchy holders to keep it in place

Wrap the velcro strap around the top of the feeding bag. I like to put the bag into the mesh pocket to keep it from moving around, but you can also use the mesh pocket to put a cooling pack.



Wrap the extra tubing and secure it with the velcro. Leave enough loose to put the adapter through one of the exit ports so you can connect the adapter to the person's feeding tube.

This picture shows the red adapter connected to Eli's feeding tube.



I took this picture just to show how big the bag is. The soap is a regular sized bottle of dish soap



GERMS!

So it is 5 days until Eli's surgery and all of a sudden I am a germaphobe. I have never been one to freak out about germs. I thinks that they are good to come in contact with through out our lives to build a stronger immune system. However, it has taken me so long to get someone to operate on Eli that I am freaking out that he is going to get sick and not get this surgery. If this surgery gets cancelled who knows how far out the next surgery date will be. I am so starting to stress and just become a ball of nerves. I want him to have this surgery. He needs this g tube. I just know it will make life for him so much better. Who knows if he will get the trach or not until we actually get there. I just want Eli to be healthy so he can get the things he needs. Until then I feel like a complete basket case!

MRI Cancelled

I forgot to put in the unexpected good news blog that Eli's MRI was cancelled because of his pneumonia. They called and rescheduled it for April 30th. It sucks, but what are you going to do. I'm praying he stays healthy for his surgery on the 18th. It would really suck to reschedule his g tube surgery. We have been waiting to get the g tube since November.